This blog is totally independent and has only three major objectives.
The first is to inform readers of news and happenings in the e-Health domain, both here in Australia and world-wide.
The second is to provide commentary on e-Health in Australia and to foster improvement where I can.
The third is to encourage discussion of the matters raised in the blog so hopefully readers can get a balanced view of what is really happening and what successes are being achieved.

Wednesday, September 14, 2016

This Seems To Have Been Around For A While But I Have Missed It - Better Late Than Never.

This report
appeared a few months ago:

The Senate

Select Committee on Health

Sixth interim report

Big health data: Australia's big potential

Here are the
recommendations:

Recommendations

Recommendation 1

The committee recommends that Australia forms
partnerships with other countries engaged in data linking to ensure that
Australian data access and linkage policies and regulations are developed to
world's best practice.

Recommendation 2

The committee recommends
that the Department of Health, as a high priority, actively explore and then
implement measures to advance cost-effective, evidence-based policy development
through the use of datalinkage.

Recommendation 3

The committee
recommends that relevant government departments should include information in
their annual reports which describes the processes and projects being
undertaken to establish evidence-based policy based on data linkage as well as
strategies they have adopted to contribute to the government's pubic datapolicy.

Recommendation 4

The committee
recommends that given the changes in technology, and mindful of the capacity
and moral obligation for governments to hold and strongly secure personal data
and privacy, the government review the operation of section 135AA of the National Health Act 1953, with the aim
of improving access to de-identified MBS and PBS data for the purpose of health
policy evaluation and development as well as research undertaken in the publicinterest.

Recommendation 5

The
committee recommends that the Australian Information Commissioner, in
consultation with privacy advocates, data custodians, academics and healthcare
consumers, review the Privacy Guidelines
for the Medicare Benefits and Pharmaceutical Benefits Programs in order to
ensure that thegovernment:

·retains ownership and
management of Australian MBS and PBS data and improves technological capacity
to ensure the privacy of all Australians health data;and

·develops a strategy
to improve access to de-identified MBS and PBS data for the purpose of health
policy evaluation and development as well as research undertaken in the public
interest, in ways thatdon't decreaseprivacy.

Recommendation 6

The committee
recommends that each Australian Government agency develop and maintain on its
website a list of datasets held by the agency along with the contact details of
the data custodian. This list should be updated at least twiceannually.

Recommendation 7

The committee
recommends that all datasets held by the Commonwealth be listed on www.data.gov.au, identifying which agency
is the datacustodian.

Recommendation 8

The committee
recommends that each Australian Government agency that is a data custodian
develop and publish on its website guidance for researchers detailing its
process for data requests andapprovals.

Recommendation 9

The committee recommends that the government
take a whole-of- government approach to streamlining the ethics approval
process and the authorising environment in consultation with the Privacy
Commissioner, privacy advocates, the NHMRC, data custodians, academics,
consumers and the States and Territories. The government should also work with
the States andTerritories to establish
a national accreditation system so that ethics approvals from accredited
jurisdictions are recognised by theCommonwealth.

Recommendation 10

The committee
recommends that relevant government agencies give greater priority to, and
adequately resource, their datacustodians.

Recommendation 11

The committee
recommends that relevant government agencies provide guidance to data
custodians to assist them in their decision-making, with a view to making more
de-identified data available on an enduringbasis.

Recommendation 12

The committee
recommends that the government adopt the Productivity Commission's proposed
principle that open access to de-identified datasets should be the default position.

Recommendation 13

The committee
recommends that the government should direct relevant agencies to release
de-identified datasets on an enduring basis as the default position.

Recommendation 14

The committee
recommends that departments that have data custodianship responsibilities must
establish and publish realistic Key Performance Indicators for the timely
consideration and approval of datasets requests. These departments must
publicly report on their KPIs in their annual reports.

If after 5 years departments continue to
delay the release of datasets, then the committee recommends that the
government establish binding timeframes for processing applications for data.
Failure to comply with the timeframe should trigger appeal rights similar to
those found in other information access regimes.

Recommendation 15

The committee recommends that Government
encourage collaboration on data linkage projects between government agencies,
as well as academia and industry to provide for evidence-based policy
development and facilitate research that is undertaken in the public interest.

Recommendation 16

The committee
recommends that government consider accrediting State data linkage units to
link Commonwealth data with State datacollections,subject to
comprehensive privacy and securityprotocols.

Recommendation 17

The committee
recommends that the Government review the cost of data access and linkage work
undertaken by Commonwealth entities with a view to facilitating research and
innovation in the nationalinterest.

It seems
pretty clear there is a large push on to get access to all sorts of information
that to date has not been all that easy to get hold of.

The most
encouraging aspect of this is that there is an explicit recommendation to
gather best practice from overseas rather than just rushing ahead. The
data-sets that are the target of all this do potentially contain a lot of personally
sensitive information and for that reason moving carefully and in an informed
way is vital.

To me there
also needs to be a disclosure regime that ensures we all get to know just who
is accessing what information and why as well as a well-developed breach
notification framework.